Hi everyone, I have been spending my time over at the SCS board lately. I realize though that not all of you likely venture over there, so I thought that I would share my experiences with you. Here is the link to my thread, which chronicles my experience with the trial: http://neurotalk.psychcentral.com/thread157880.html

I am very happy with the success and lower levels of pain that I experienced, and I'm getting the permanent one implanted in 3 weeks. I hope that my experiences can help some of you maybe thinking about this procedure either in the near future or down the road. It is something that requires a lot of contemplation, without a doubt, I know I thought and researched a lot before I agreed to it.

Now comes the 3 weeks in between, and my pain has already reached high levels again after just short hours. It's back to the RSD I know, but now there is at least hope in sight for a better life. I'm also thinking of seeing an oriental medicine doctor to try acupuncture in the meantime. It's worth a try and better than chemicals, right?

Wishing for a low pain night for everyone

Thanks for letting us know how you are doing. I would give a round of oriental medicine a try before having the implant done. I know there are herbs they make in a tea that I was told healed rsd. I tried it years ago and it is some form of detox for your body. It didn't work great for me but I had so many meds in my system and I was not ready to go cold turkey to try it out. The Chinese doctor was a smart man and was curing cancer in China and was brought over here...some hospital in Chicago I think. Heck if it works you won't have to have the SCS done. That would be GREAT!!!!!!! Keep us informed.
Thanks,
kathy d

yellow,

I had a failed trial. Can you tell me if you hurt really bad in your back afterwards. I was down for 3 out of my 5 day trial.:

I had a 7 day trial and I had really sharp intense pain in my back where the wires were coming out 5 out of 7 days (the last two days the pain was definitely still there, but it was less intense and my back was finally less tender as well). The pain in my back was not fun at all, but I felt it was worth it completely due to the relief in my knees and legs that I was getting from the stimulator.

After the leads were removed, I had some mild soreness in my back for about 6 days and then it went away. I think part of this, though, is because the resident who took my stitches out didn't really know what he was doing. I've never had so much pain from having stitches removed and at one point he even got one of them stuck. I think my pain would've gone away sooner after if it wasn't for this.

During the trial I was active, maybe too much but I wanted to make the most of the week. I was in physical therapy the same day it was in doing a decent amount of exercises, which a lot of people probably wouldn't advise but I made it through ok. The next day I think I pushed it too much though between sitting in classes for 3 hours, driving to and from school and to and from physical therapy, and then going to an induction ceremony in the evening.

Hope this answers your question!

Hi Yellow,

You are so young to take this step and it seems as though you have not had CRPS for very long. Have you tried tCDS? If not please ask your doctor if you could exhaust all non invasive treatments first.

Please see mrandmrsbat's post today and take the time to do your own independent research. Putting the breaks on until you are thoroughly informed does not eliminate the possibility of implantation in the future. Informed consent is a tricky thing with SCS. When they fail for CRPS patients there is no reporting of the failures to the SCS manufacturers and if you review the experiences of failed SCS for folks on NT it is common for the physician to inform the patient that there is nothing more that he/she can do.

I am particularly concerned because in a prior post you indicated that you were hopeful that you could teach sunday school and return to your classes three days after implantation. It is very disconcerting that you are two weeks away from your surgery date and your physician has not informed you of the very serious recovery time as well as the very real risks.

I am keeping you in my prayers and thoughts!!!! I am so sorry that at such a young age you have to deal with CRPS and the kind of decisions that are part and parcel of the disease.

The best thing you can do for yourself is to become your own advocate!

I am keeping you in my thought and prayers!

I have had the RSD for 2 1/2 years now. I know to some it may not be long as many have been suffering a lot longer, but I am not new to the disease either and it continues to worsen. Unfortunately tCDS is something that I cannot afford, so I have not looked into it very far. HBOT is another treatment I would love to try if I could, but sadly insurance coverage is not there.

I promise that I have done LOTS of research, especially reading countless stories of patients that have had an SCS implanted for RSD. There are success stories as well as stories of failure. This is a risk with RSD for any kind of treatment where even a needle is involved, unfortunately. However weighing everything and my particular experiences and body's responses to other treatments, I feel it is an appropriate risk to take. This is a decision that each patient should arrive at on his or her own, so I strongly advocate doing your own research and being fully informed before you commit to the implant!

I tend to be very ambitious, but I am also aware of how sidelined people are after the surgery. I have done so much reading to try to figure out what my recovery time will be but in the end I know that I will just have to wait and see for myself. I am getting the percutaneous leads as opposed to the paddle ones, though, which has an easier recovery, albeit still a tricky one, though. Teaching Sunday School 3 days after is one commitment that I have to do. I will only be there for 2 hours and I am nervous about it but I am confident I can make it through and be ok. My doctor didn't even think that I would be able to do physical therapy the day my trial was put in but I was stubborn and went there and did quite a lot! (under careful guidance of my therapist, of course). So we will see, if I have to cancel some plans like going to some of my classes, then I have to. But I'm also very determined to be proactive in my recovery, while still being very careful of my leads not migrating.

As I said, this is a decision that every RSD patient needs to make for him/herself. I just wanted to share my experience with my decision in hopes that it could be of help to others who are considering it.

Thank you, and again I appreciate your concern!